OT visit and house alterations

[chloe0612]

Hi everyone

I have read previous posts where others have said they have had advice from OT about whether their house is suitable for alterations which may be needed in the future or not. Two months since diagnosis my mum saw OT for the first time last week and I was hoping she would get some sort of steer about what to consider for the future.

OT asked what current difficulties she has and my mum said walking up stairs and standing in the shower. OT advised about getting an additional stair rail now and said stair lift could be fitted in future. She said shower wasn’t big enough for a seat or an extra handrail so there was no advice about how to make it easier. When I asked about potential alterations she just said take one day at a time and call us if you need help in future.

Seems like a very reactive approach? If my mum suddenly finds she can’t shower I’m not convinced they are going to be able to do anything to solve it quickly and she lives alone with no care set up. Am I being unreasonable to think this is unsafe?

[Purpletunes]

No you're not being unreasonable. We also found whenever we asked what we may need in future, we were fobbed off to call when my mum's condition deteriorated.

I used this forum, the MNDA guides and the website of the equipment supplier to see what was available. Then would ask the OT if they could provide it.

In our area they couldn't give us the waiting times for a wet room so we did the work ourselves.

[chloe0612]

Thanks for your reply Purpletunes Very helpful and good to know I am not missing something. I felt that OT was the person we needed to see most and was the longest wait and appointment was very disappointing.

[Purpletunes]

By the time my mum was diagnosed she was finding it difficult to walk without a walking frame and was further along into her progression.

We had a stairlift in place from when my dad was alive.

The first OT provided the following a commode for downstairs as we only have a toilet upstairs. Mum wanted to continue sitting on the sofa (we were offered a riser recliner and in hindsight we should have accepted it as it took ages to get the correct sized one when she needed it and we had space to store it) but was finding it difficult to get up, so they gave us seat raisers to lift it up. She also wanted to keep her bed, so they supplied this contraption to fit to the base of the frame so we could raise the mattress head so she wasn't lying flat. They also supplied walking frames that were the correct height.

Later on I found out they could provide lifting devices, my mum had several falls. As her mobility and strength decreased it became more challenging to get her up from the floor.

As her walking and hand grip weakened we asked for a hoist. Prior to this the neurologist suggested getting a Sara Stedy as mum was struggling to walk but her grip was good to pull herself up. At this point we had moved to a community profile bed. Then later on we moved from a standard foam mattress to one that circulated air to avoid pressure sores.

Sorry for the long post. I found it useful to see what others were receiving. Your mum's condition may unfold completely differently. Plus as others have mentioned it's a postcode lottery what you may receive.

For us various OTs, the district nurse and people from the council have been able to prescribe equipment.

All the best

[Ellie]

Seems like a very reactive approach?

It seems like a very lazy and a very wrong and very unsafe approach; the OT is aware that your mum has a problem with standing in the shower and is at risk of falling, yet has offered no remedial solution nor even advice.

What size is the shower tray? Presumably it's a 'step-in' shower; does your mum have problems getting into the shower too?

Adaptations take time, often a lot of time, so definitely need to be pre-planned and not a case of, "just take one day at a time".

I don't blame for you being worried, Chloe, especially as your mum lives alone and has such a disinterested OT...

Is your mum linked in with a hospice or palliative care team? xx

[Zante]

chloe0612 I also think this sounds quite lazy from the OT. I am very slow progressing and already the neuro physio arranged for someone to come out and have fitted railings up the stairs and 3 grab rails in shower, and since then had a railing fitted outside the house for steps, a seat raiser for underneath the settee cushions, a shower bath seat thingy which goes across the bath sides as shower is above bath, some cutlery with easy handles, and an ot from social services has recently visited to measure up in the bathroom and take photos to then refer for the council adaptions team for a wetroom( i dont know about payment for this yet as financial assessments haven't been raised yet), been advised from referral to begin work is approx a year.

Can you contact your council social services because they often offer adaptions services and odd jobs for disabled people etc without a healthcare referral. x

[KimB]

I had to remodel my condo. I found a contractor with experience in accessible housing but I knew, from reading what others had done, that the remodel would be expensive. I had all my doors widened and my master bathroom gutted. I put in a bidet toilet seat and a roll-in shower with two heads and a seat. I took out all carpeting and put in tile. The place was a mess for a couple of months but I did it before I needed it.

My OT had nothing to say about remodeling, just fitting me to a PWC.

[chloe0612]

This is all very helpful thank you Purpletunes Ellie Zante KimB It is really useful to hear about equipment that other people have been offered. The OT did say there is a store/warehouse near to my mums where we can see various types of equipment if we want to buy ourselves so it would probably be worth going there when my mum feels up to it (both psychologically and physically). OT did suggest handrails for stairs and other points in the house but just said shower was too small to add anything. There is a small ledge to step over to get into shower, my mum can do it by holding on to the one rail she has but trickier getting out of the shower. She has shower over bath downstairs but can’t get into the bath. I think bathroom will need a remodel.

Ellie in answer to your other questions no one has spoken to us about hospice or palliative care team yet.

[Purpletunes]

Although it may seem early to be referred to hospice/palliative care due to the connotations, they can support your mum in the community. The often have there own therapist etc and can get things moving a lot faster than other care teams.

Although it can be overwhelming I've found it was useful when the neurologist referred us to everyone so we could see who's the most proactive and helpful.

[Tabbycat]

chloe0612 as Zante says, contact your Local Authority / Social Services OT, they deal with larger adaptations and often have a Housing Adaptations Team. You can self-refer for an assessment for your Mum.

Health Service employed occupational therapists (hospital and community) only usually have access to smaller equipment and a limited range of equipment and adaptations.

Having said that, it is very poor that the Health OT did not offer to refer your Mum to the local authority / social services OT.

[Ellie]

Ellie in answer to your other questions no one has spoken to us about hospice or palliative care team yet.

Chloe, I must stress not to equate the words 'hospice' and 'palliative care' with imminent death...

They cover people like me and your mum who are living with a life-limiting condition and are often very good at hurrying along the provision of services and equipment, albeit not guaranteed. xx

[chloe0612]

Many thanks, I will look into local services and enquire about hospice/palliative care support with our mnd nurse

[MMG]

We were involved with the hospice right from diagnosis when my husband was still fit and well. They call the service "living well" and are very keen to stress that they are there to help people live with life limiting conditions.

They were invaluable in nudging other services and getting things done for us.

Of course they were also there to assist at the end, but we had built up relationships with them by then which made it easier.

Good luck

[Hils0912]

We had the OT round who came up with some suggestions, and did various visits (he even came round to help move the room round when Syd was moved into respite care over new year and his care was reassessed, but it was really the adaptations team from the local council who have been the most help with property things. They put forward plans for an extension to be built on the back (unfortunately knocked back), after looking round the house and deciding it wasn't possible to have a lift put in. They have fought for us, since Syd got his diagnosis in August 22 and we should have a new build bungalow to move into May under the exceptional circumstances rule and we will then sell our property.

The local hospice are regularly in touch to see if Syd needs anything and every so often we get a call from the night team just checking in on him too. The hospice team are quick to pick up on things between visits with the MND team and also liaise with them.

We also get regular district nurses and they seem to order all sorts of different stuff for him too (and will talk to his doctor etc).

[Olivia H]

Similar experience here to others above, referral to Local Authority OT who came out and immediately provided (within a few days): seat shelf for shower, which is over bath, bath riser chair, toilet higher seat and frame, riser bar to go under bed mattress, perching seat for kitchen, wheeled walker frame, wheeled trolley for pushing to move things from kitchen to lounge, commode chair. She also arranged for someone to fit a grab rail in shower, to the top of stairs and two outside the front door step, and a hand rail all the way up the stairs, there was no charge for any of these things. Some I didn't need to use immediately, some I did, and some have become essential over time. The grab rails in particular, given my weak legs and poor balance. Also referred for wheelchair assessment and have manual wheelchair. That is NHS provided.